Re: how fast does NV work?

[Guest guest]

Hi Sam,

I hope we can figure this out for you because it does appear to be pretty rare

for NV not to show signs within a day to a few days...and so far the longest

time reported for a surge was around 2 weeks. I don't know if anyone's child

took longer than that. There are a few that stopped due to not being able to

get it in, and Bibi just stopped due to behavior but we are speaking offlist and

she may take Liralen's advice and start again very slowly and will keep us

posted. (initial bad behavior just like when first starting fish oil is not

uncommon as a typically mild temporary side effects lasting about a week)

Here are some questions for you:

Hydration- are you making sure Evangelique is well hydrated? Normal amount of

liquid a day would on estimate be body weight divided in half = amount of

liquid. Keep in mind liquid is in food too. More here on that

http://pursuitofresearch.org/faq.html#serve

Elimination/detox stage The first 2 weeks we have found to be the biggest signs

of detox in regards to elimination. The signs of it would be an increase in

soft (not necessarily loose) very foul smelling bowel movements. Some parents

have described they look different as well- but without going into details the

most important aspect to me is that even if the child formerly was constipated

frequently -they are now regular and their poops (to put it bluntly) stink!!!

Have you noticed this yet? I suspect not but let us know.

I believe that this stage is important and we typically see surges during the

detox. There are a number of foods in NV including the essential amino acids

that will naturally and dramatically increase the body's production of the

antioxidant glutathione. " The antioxidant glutathione—critical for the body to

excrete metals—typically works by binding to heavy metals, which the body then

knows to eliminate. In 2004, researcher Jill , Ph.D., of the Arkansas

School of Medicine, led a pioneering study that showed autistic kids had

significantly less glutathione than typical kids—which put their bodies in a

state of " constant oxidative stress. " In other words, autistic kids were

genetically predisposed to have low glutathione levels, making them particularly

susceptible to heavy metal toxicity. " http://pursuitofresearch.org/science.html

Level or heaping scoop? Sometimes it may seem silly but just by raising up the

dosage a tweak has made a difference in a few cases. NV appears to be dosage

dependent. So are you using level or heaping scoops? I recommend heaping if

level isn't working -at least to try before you give up. Also don't forget the

product comes with a money back guarantee if it doesn't work within the 30 days

at all. I'm sure that this would be money you wouldn't want back -you want it

to work as I know I would!!! But just to let you know you can get the refund

just in case. I again no very few that did and hope you don't have to either.

Here's more about dosage http://pursuitofresearch.org/faq.html#dosage

Also while most of us look for speech surges first in this group, please don't

underestimate the other areas of first sign surges which are also welcome and

beautiful including sudden increase in humor and laughing/smiling, suddenly more

facial expression and/or oral exploration, sudden new interests in

music/humming, exploration and imagination, picking up meaning of abstract humor

or thought, sudden improvement in academic, sudden improvement in motor planning

in the body. http://pursuitofresearch.org/pursuit.html

Are you saying you have seen no change in any area? While most of us have seen

the dramatic surges I hope you see too soon, some have only had mild surges and

again appears to be pretty rare for those who have really given NV a good go at

full dosage for at least 2 weeks and have seen no changes at all. While it's

probably impossible for NV to work for all -I wouldn't give up just yet. While

most of us have found the NV alone (with the fish oils as they are the essential

fatty acids and not found in NV) we do have one parent who only saw mild surges

previous that mixed into her child's NV serving both probiotics and digestive

enzymes and 'then' saw dramatic surges. The success rate for NV appears to be

higher and the surges more dramatic than the fish oils pretty much across the

board -but of course there are always going to be exceptions. I do hope your

child isn't an exception. Please do get back to me when you have a chance, and

hope others can share more to help.

Best!

=====

[Guest guest]

Well unfortunately my kiddo was one it did not work for. He was just past 4yrs

when we started and he took to it no problem. He is diagnosed with autism and

was nonverbal and was attending therapies (ST, OT, PT). He enjoyed NV as a

shake, but I did notice his diarrhea did seem to be more frequent on NV. I had

him on NV for almost 6 weeks with no noticeable surges. I kept a daily journal

in hopes to notice even a slight change, but no dice. Once I quit the NV his

diarrhea did improve but there was no loss or regression. Since we have quit he

has had some leaps and bounds when some supplements were tweaked. We are

contemplating giving NV again to see if there is a difference but when I

canceled I had to agree that I could not start up a membership for awhile (6

months I think? not sure).

>

> 2. Have there been any kids where NV just did not work for them?

> thanks all

> Sam

>

[Guest guest]

Thanks ,

1. Evangelique drinks a lot of water and rice milk daily so hydration is not a

concern.

2. her stools are not foul smelling at all but i have noticed an increase in

bowel movements.

3. I have been giving her 2 level scoops for the past 2 weeks but tonight i

made them heaping. Thanks for the info re money back guarantee I just wish we

had concrete results. I ordered the NV awhile back and did not start til

recently because Evangelique was on a 12 week plan with steroids for her

eosinophilic esophagitis so I did not want anything to interfere with the trial.

4. i)regarding humour- she laughs at everything and has a wonderful sense of

humour and tries to play pranks on people so no change noticed here.

ii)Smiling- she is a very happy child ( of course when not throwing her too

many temper tantrums a day- but they do not last very long) she is very social

and says " Hi " to everyone that crosses her path

iii) oral exploration- she mouths everything and it did start to get better

but since the NV now that i think of it her need to mouth her clothes etc has

definitely increased.

iv) she has always loved music / humming so no change there

v) playing on her own has gotten better- she usually wants to be held if you

are working in the kitchen (or play with her older brother) etc and i have

noticed that she is more willing to go play on her own.

Evangelique is very tiny for her age- the size of a 2 yr old and weighs 22 lbs.

She has a lot of behaviour issues - ie - when asked to stop doing something she

will not listen even though she understands( she needs to be physically removed

from the situation in order for her to stop 90% of the time) she still pulls

hair/ hits and pinches (this is mainly directed any myself and my son- my dh

rarely gets this ) she loves physical play and is very rough- she will put her

arms around you and hug so tight she strangles - i am constantly pulling her off

her brother. when we do not understand what she wants she can destroy a room in

seconds- she will throw whatever she can reach.

Thankfully - there was no increase in these behaviours.

Just prior to starting on NV she started babbling up a storm- she pretends that

she is having a conversation with you and talks jibberish on and on - you can

make out a few words like " bye " " mama " " dad " etc while she is " talking "

So overall, it is fair to say that she has definitely increased her need to

mouth everything and she is playing better on her own.Would these be considered

surges? Would you anticipate this could lead to helping her speech etc?

I tried fish oils last year for 3 months with no changes at all- do you suggest

i try the fish oils with the NV?

thanks so much for your input and i am praying she is not an exception . . .

Sam

On 2010-10-03, at 9:32 PM, kiddietalk wrote:

> Hi Sam,

>

> I hope we can figure this out for you because it does appear to be pretty rare

for NV not to show signs within a day to a few days...and so far the longest

time reported for a surge was around 2 weeks. I don't know if anyone's child

took longer than that. There are a few that stopped due to not being able to get

it in, and Bibi just stopped due to behavior but we are speaking offlist and she

may take Liralen's advice and start again very slowly and will keep us posted.

(initial bad behavior just like when first starting fish oil is not uncommon as

a typically mild temporary side effects lasting about a week)

>

> Here are some questions for you:

>

> Hydration- are you making sure Evangelique is well hydrated? Normal amount of

liquid a day would on estimate be body weight divided in half = amount of

liquid. Keep in mind liquid is in food too. More here on that

http://pursuitofresearch.org/faq.html#serve

>

> Elimination/detox stage The first 2 weeks we have found to be the biggest

signs of detox in regards to elimination. The signs of it would be an increase

in soft (not necessarily loose) very foul smelling bowel movements. Some parents

have described they look different as well- but without going into details the

most important aspect to me is that even if the child formerly was constipated

frequently -they are now regular and their poops (to put it bluntly) stink!!!

Have you noticed this yet? I suspect not but let us know.

>

> I believe that this stage is important and we typically see surges during the

detox. There are a number of foods in NV including the essential amino acids

that will naturally and dramatically increase the body's production of the

antioxidant glutathione. " The antioxidant glutathione—critical for the body to

excrete metals—typically works by binding to heavy metals, which the body then

knows to eliminate. In 2004, researcher Jill , Ph.D., of the Arkansas

School of Medicine, led a pioneering study that showed autistic kids had

significantly less glutathione than typical kids—which put their bodies in a

state of " constant oxidative stress. " In other words, autistic kids were

genetically predisposed to have low glutathione levels, making them particularly

susceptible to heavy metal toxicity. " http://pursuitofresearch.org/science.html

>

> Level or heaping scoop? Sometimes it may seem silly but just by raising up the

dosage a tweak has made a difference in a few cases. NV appears to be dosage

dependent. So are you using level or heaping scoops? I recommend heaping if

level isn't working -at least to try before you give up. Also don't forget the

product comes with a money back guarantee if it doesn't work within the 30 days

at all. I'm sure that this would be money you wouldn't want back -you want it to

work as I know I would!!! But just to let you know you can get the refund just

in case. I again no very few that did and hope you don't have to either. Here's

more about dosage http://pursuitofresearch.org/faq.html#dosage

>

> Also while most of us look for speech surges first in this group, please don't

underestimate the other areas of first sign surges which are also welcome and

beautiful including sudden increase in humor and laughing/smiling, suddenly more

facial expression and/or oral exploration, sudden new interests in

music/humming, exploration and imagination, picking up meaning of abstract humor

or thought, sudden improvement in academic, sudden improvement in motor planning

in the body. http://pursuitofresearch.org/pursuit.html

>

> Are you saying you have seen no change in any area? While most of us have seen

the dramatic surges I hope you see too soon, some have only had mild surges and

again appears to be pretty rare for those who have really given NV a good go at

full dosage for at least 2 weeks and have seen no changes at all. While it's

probably impossible for NV to work for all -I wouldn't give up just yet. While

most of us have found the NV alone (with the fish oils as they are the essential

fatty acids and not found in NV) we do have one parent who only saw mild surges

previous that mixed into her child's NV serving both probiotics and digestive

enzymes and 'then' saw dramatic surges. The success rate for NV appears to be

higher and the surges more dramatic than the fish oils pretty much across the

board -but of course there are always going to be exceptions. I do hope your

child isn't an exception. Please do get back to me when you have a chance, and

hope others can share more to help.

>

> Best!

>

>

>

> =====

>

[Guest guest]

Thanks so much for answering all these questions Sam! I don't know about

steroids, but do know that if one is on antibiotics that appears to affect the

ability of the NV to work. Even though there are no known drug interactions for

NV...we do know quite a few children now off of seizure and sleep medications

due to NV -so clearly in some way they do affect each other, but of course in a

good way.

How long ago was your child on the trial of steroids and was it the inhaled

steroids? Let me know. Since steroids are known to affect growth, weight,

bones -I'm suspecting that may be why you aren't seeing more yet. So it's been

2 weeks- but....with antibiotics it takes about a week it seems before the NV

will work -or work again or as well as it can. Again don't know about the

steroids but highly suspect that is the culprit here!

The increase in the bowel movements is normal -but you should be for sure

noticing the difference in the odor too in the first stage of detox. But again

that can have to do with the steroids? So stay tuned for that.

For the sense of humor, smiling...it's not that kids with apraxia don't have a

sense of humor or smile...but- they don't always catch on to abstract humor.

That would be the difference between say laughing at someone slipping on a

banana peel to a person sitting at a desk watching another person run and saying

" hey slow down or I'll stick banana peels in front of my desk " (OK that may not

be funny but just trying to give an example of abstract humor) And the smiling-

there is a difference between smiling because one if happy -and an increase in

facial expressions- smiles included. There is a difference between being able

to even make facial expression to an increase in facial expression when not

engaged. We are hearing about increases in facial expression in general. I try

to lay out the various areas of surge here

http://pursuitofresearch.org/pursuit.html

Apraxia is the inability to perform on command...so it doesn't mean the child or

adult 'can't' it means they can't consistently when they want to/are asked

to/are thinking about it. (to again make it clear why ABA is not appropriate to

treat apraxia)

The increase in independent play is good- but of course based on what most of us

are seeing you'd want to see much more than just that! But then again it's only

been 2 weeks- and please do let me know how soon after stopping the trial of

steroids you started NV...and what type of steroids.

We'll get to the bottom of this...the fact you are seeing surges in independent

play I'm hoping too that's a good sign there will be much more to come soon!

=====

[Guest guest]

An increase in imaginative (independent) play was one of the first things I saw

in my son. I would play with him before, narrating everything we did. Talk, talk

talk talk. Well, recently I noticed that he's narrating his independent play.

here comes the train, boxcar, boxcar, tanker, boxcar, 'boose in the back, round

the corner, slowly slowly. The light is red, stop train stop.

Beautiful words trickling down.

--

> The increase in independent play is good- but of course based on what most of

us are seeing you'd want to see much more than just that! But then again it's

only been 2 weeks- and please do let me know how soon after stopping the trial

of steroids you started NV...and what type of steroids.

>

> We'll get to the bottom of this...the fact you are seeing surges in

independent play I'm hoping too that's a good sign there will be much more to

come soon!

>

>

> =====

>

[Guest guest]

Evangelique was on a 12 week course of pulmicort nebules (1 mg for 6 weeks

then .5 mg for 6 weeks) normally this is inhaled but to help reduce the swelling

in her esophogus she took it orally mixed with 5 packages of spenda in a

syringe. She stopped the steroids on Thurs Sept 16 BUT she did start a 10 day

course of biaxin on Sept 15 last dose was given on Sat Sept 25 and we started

NV the next day on sunday Sept 26 . . . So if it takes a week for the

antibiotics to get out of the system (which i did not realize then hopefully we

will see some surges)

Re te bowel movements - how long does the odour usually last for during the

detox?

Thanks for the explanation re the humour and smiling

Regarding ABA - in your opinion (which I have in the highest regard and

appreciate your hard work, dedication and research ) what works best behaviours

and apraxia? To be honest , i though that apraxia was just affected by speech-

ie one day she can say " dog " clear as day and the next day she can't say it all.

So if i ask her to do something and she does not do it - she is not being

willful - she really can't do it? Another example of her behaviour and not sure

if any other families deal with this- anything can set her off at any given

time - ie- if i ask her a question during dinner - any question like how was

your day? are you enjoying your dinner? it could set her off where she would

throw her fork or swipe her plate to the ground etc.

One huge thing that happened last night after dinner is Evangelique drew a

perfect circle. Does not sound like much for a 4 yr old but when she usually

draws circles she would go around and around continuously but last night she

started and stopped the circle to perfection.

I am not giving up yet and truly want this to work. This mommy is hoping for

some surges

thanks

Sam

On 2010-10-06, at 1:27 PM, kiddietalk wrote:

> Thanks so much for answering all these questions Sam! I don't know about

steroids, but do know that if one is on antibiotics that appears to affect the

ability of the NV to work. Even though there are no known drug interactions for

NV...we do know quite a few children now off of seizure and sleep medications

due to NV -so clearly in some way they do affect each other, but of course in a

good way.

>

> How long ago was your child on the trial of steroids and was it the inhaled

steroids? Let me know. Since steroids are known to affect growth, weight, bones

-I'm suspecting that may be why you aren't seeing more yet. So it's been 2

weeks- but....with antibiotics it takes about a week it seems before the NV will

work -or work again or as well as it can. Again don't know about the steroids

but highly suspect that is the culprit here!

>

> The increase in the bowel movements is normal -but you should be for sure

noticing the difference in the odor too in the first stage of detox. But again

that can have to do with the steroids? So stay tuned for that.

>

> For the sense of humor, smiling...it's not that kids with apraxia don't have a

sense of humor or smile...but- they don't always catch on to abstract humor.

That would be the difference between say laughing at someone slipping on a

banana peel to a person sitting at a desk watching another person run and saying

" hey slow down or I'll stick banana peels in front of my desk " (OK that may not

be funny but just trying to give an example of abstract humor) And the smiling-

there is a difference between smiling because one if happy -and an increase in

facial expressions- smiles included. There is a difference between being able to

even make facial expression to an increase in facial expression when not

engaged. We are hearing about increases in facial expression in general. I try

to lay out the various areas of surge here

http://pursuitofresearch.org/pursuit.html

>

> Apraxia is the inability to perform on command...so it doesn't mean the child

or adult 'can't' it means they can't consistently when they want to/are asked

to/are thinking about it. (to again make it clear why ABA is not appropriate to

treat apraxia)

>

> The increase in independent play is good- but of course based on what most of

us are seeing you'd want to see much more than just that! But then again it's

only been 2 weeks- and please do let me know how soon after stopping the trial

of steroids you started NV...and what type of steroids.

>

> We'll get to the bottom of this...the fact you are seeing surges in

independent play I'm hoping too that's a good sign there will be much more to

come soon!

>

> =====

>

[Guest guest]

Hello Sam,

I can't answer to all you've said because I haven't experienced all that you

have with your child... but something I wanted to say is, the more AWARE your

child becomes, the MORE frustrated they may get because they know just how much

they can't tell you what they want.... does that make sense? It will come, but,

especially in the beginning, it can make them more upset. It isn't that way with

all children (most report a happier disposition) but some do simply because they

are being awakened inside and are more aware of their lack of ability. And to

answer the other question you had... yes, some days they say a word perfectly

and then the next, look at you with a blank look on their face wondering what in

the world you're doing asking them to say that word! I made the mistake of

thinking my son was being defiant when he wouldn't come to me when I called him.

I will never forget the look on his face. THEN the next day, his therapist says,

" You know, I think he would understand better by SHOWING him what you want him

to do, rather than tell him. " I felt about an inch high for losing it with him.

But, live and learn. I just had no idea of what apraxia was at that time and

didn't understand his limitations. It can be frustrating but, being patient with

them is key and not to expect perfect consistency all the time. It is a process.

It will take time to heal. You are doing all you can do to help your child and

to be there for her. She will surge and improve, just don't give up or lose

heart.

Sincerely,

Romesa

The NV Sheriff

334-220-8140

>

> From: lbrass@...

> Date: Wed, 6 Oct 2010 21:55:38 -0400

> Subject: Re: [ ] Re: how fast does NV work?

>

> Evangelique was on a 12 week course of pulmicort nebules (1 mg for 6 weeks

then .5 mg for 6 weeks) normally this is inhaled but to help reduce the swelling

in her esophogus she took it orally mixed with 5 packages of spenda in a

syringe. She stopped the steroids on Thurs Sept 16 BUT she did start a 10 day

course of biaxin on Sept 15 last dose was given on Sat Sept 25 and we started NV

the next day on sunday Sept 26 . . . So if it takes a week for the antibiotics

to get out of the system (which i did not realize then hopefully we will see

some surges)

>

> Re te bowel movements - how long does the odour usually last for during the

detox?

>

> Thanks for the explanation re the humour and smiling

>

> Regarding ABA - in your opinion (which I have in the highest regard and

appreciate your hard work, dedication and research ) what works best behaviours

and apraxia? To be honest , i though that apraxia was just affected by speech-

ie one day she can say " dog " clear as day and the next day she can't say it all.

So if i ask her to do something and she does not do it - she is not being

willful - she really can't do it? Another example of her behaviour and not sure

if any other families deal with this- anything can set her off at any given time

- ie- if i ask her a question during dinner - any question like how was your

day? are you enjoying your dinner? it could set her off where she would throw

her fork or swipe her plate to the ground etc.

>

> One huge thing that happened last night after dinner is Evangelique drew a

perfect circle. Does not sound like much for a 4 yr old but when she usually

draws circles she would go around and around continuously but last night she

started and stopped the circle to perfection.

>

> I am not giving up yet and truly want this to work. This mommy is hoping for

some surges

>

> thanks

> Sam

>

>

> On 2010-10-06, at 1:27 PM, kiddietalk wrote:

>

> > Thanks so much for answering all these questions Sam! I don't know about

steroids, but do know that if one is on antibiotics that appears to affect the

ability of the NV to work. Even though there are no known drug interactions for

NV...we do know quite a few children now off of seizure and sleep medications

due to NV -so clearly in some way they do affect each other, but of course in a

good way.

> >

> > How long ago was your child on the trial of steroids and was it the inhaled

steroids? Let me know. Since steroids are known to affect growth, weight, bones

-I'm suspecting that may be why you aren't seeing more yet. So it's been 2

weeks- but....with antibiotics it takes about a week it seems before the NV will

work -or work again or as well as it can. Again don't know about the steroids

but highly suspect that is the culprit here!

> >

> > The increase in the bowel movements is normal -but you should be for sure

noticing the difference in the odor too in the first stage of detox. But again

that can have to do with the steroids? So stay tuned for that.

> >

> > For the sense of humor, smiling...it's not that kids with apraxia don't have

a sense of humor or smile...but- they don't always catch on to abstract humor.

That would be the difference between say laughing at someone slipping on a

banana peel to a person sitting at a desk watching another person run and saying

" hey slow down or I'll stick banana peels in front of my desk " (OK that may not

be funny but just trying to give an example of abstract humor) And the smiling-

there is a difference between smiling because one if happy -and an increase in

facial expressions- smiles included. There is a difference between being able to

even make facial expression to an increase in facial expression when not

engaged. We are hearing about increases in facial expression in general. I try

to lay out the various areas of surge here

http://pursuitofresearch.org/pursuit.html

> >

> > Apraxia is the inability to perform on command...so it doesn't mean the

child or adult 'can't' it means they can't consistently when they want to/are

asked to/are thinking about it. (to again make it clear why ABA is not

appropriate to treat apraxia)

> >

> > The increase in independent play is good- but of course based on what most

of us are seeing you'd want to see much more than just that! But then again it's

only been 2 weeks- and please do let me know how soon after stopping the trial

of steroids you started NV...and what type of steroids.

> >

> > We'll get to the bottom of this...the fact you are seeing surges in

independent play I'm hoping too that's a good sign there will be much more to

come soon!

> >

> > =====

> >

[Guest guest]

So -- if we have been on full dose for 2 1/2 weeks -- and I am noticing no

surges/changes -- is my daughter a " non-responder? " If so -- is there any

anecdotal data on why certain kids are not responding? Thanks!

>

> Hi Sam,

>

> I hope we can figure this out for you because it does appear to be pretty rare

for NV not to show signs within a day to a few days...and so far the longest

time reported for a surge was around 2 weeks. I don't know if anyone's child

took longer than that. There are a few that stopped due to not being able to

get it in, and Bibi just stopped due to behavior but we are speaking offlist and

she may take Liralen's advice and start again very slowly and will keep us

posted. (initial bad behavior just like when first starting fish oil is not

uncommon as a typically mild temporary side effects lasting about a week)

>

> Here are some questions for you:

>

> Hydration- are you making sure Evangelique is well hydrated? Normal amount of

liquid a day would on estimate be body weight divided in half = amount of

liquid. Keep in mind liquid is in food too. More here on that

http://pursuitofresearch.org/faq.html#serve

>

> Elimination/detox stage The first 2 weeks we have found to be the biggest

signs of detox in regards to elimination. The signs of it would be an increase

in soft (not necessarily loose) very foul smelling bowel movements. Some

parents have described they look different as well- but without going into

details the most important aspect to me is that even if the child formerly was

constipated frequently -they are now regular and their poops (to put it bluntly)

stink!!! Have you noticed this yet? I suspect not but let us know.

>

> I believe that this stage is important and we typically see surges during the

detox. There are a number of foods in NV including the essential amino acids

that will naturally and dramatically increase the body's production of the

antioxidant glutathione. " The antioxidant glutathione—critical for the body to

excrete metals—typically works by binding to heavy metals, which the body then

knows to eliminate. In 2004, researcher Jill , Ph.D., of the Arkansas

School of Medicine, led a pioneering study that showed autistic kids had

significantly less glutathione than typical kids—which put their bodies in a

state of " constant oxidative stress. " In other words, autistic kids were

genetically predisposed to have low glutathione levels, making them particularly

susceptible to heavy metal toxicity. " http://pursuitofresearch.org/science.html

>

> Level or heaping scoop? Sometimes it may seem silly but just by raising up

the dosage a tweak has made a difference in a few cases. NV appears to be

dosage dependent. So are you using level or heaping scoops? I recommend

heaping if level isn't working -at least to try before you give up. Also don't

forget the product comes with a money back guarantee if it doesn't work within

the 30 days at all. I'm sure that this would be money you wouldn't want back

-you want it to work as I know I would!!! But just to let you know you can get

the refund just in case. I again no very few that did and hope you don't have

to either. Here's more about dosage

http://pursuitofresearch.org/faq.html#dosage

>

> Also while most of us look for speech surges first in this group, please don't

underestimate the other areas of first sign surges which are also welcome and

beautiful including sudden increase in humor and laughing/smiling, suddenly more

facial expression and/or oral exploration, sudden new interests in

music/humming, exploration and imagination, picking up meaning of abstract humor

or thought, sudden improvement in academic, sudden improvement in motor planning

in the body. http://pursuitofresearch.org/pursuit.html

>

> Are you saying you have seen no change in any area? While most of us have

seen the dramatic surges I hope you see too soon, some have only had mild surges

and again appears to be pretty rare for those who have really given NV a good go

at full dosage for at least 2 weeks and have seen no changes at all. While it's

probably impossible for NV to work for all -I wouldn't give up just yet. While

most of us have found the NV alone (with the fish oils as they are the essential

fatty acids and not found in NV) we do have one parent who only saw mild surges

previous that mixed into her child's NV serving both probiotics and digestive

enzymes and 'then' saw dramatic surges. The success rate for NV appears to be

higher and the surges more dramatic than the fish oils pretty much across the

board -but of course there are always going to be exceptions. I do hope your

child isn't an exception. Please do get back to me when you have a chance, and

hope others can share more to help.

>

> Best!

>

>

>

> =====

>

[Guest guest]

I know that a few parents who didn't see any change/surges on the recommended

dosage who increased their child's dosage saw almost immediate improvement. You

may want to consider that. Perhaps she is one of the few who need a little more

to see a surge. You might want to try 3 scoops a day and make sure she is well

hydrated. Best of luck to you! I really hope that helps her!

Sincerely,

Romesa

The NV Sheriff

334-220-8140

From: emonline2000@...

Date: Thu, 7 Oct 2010 14:23:23 +0000

Subject: [ ] Re: how fast does NV work?

So -- if we have been on full dose for 2 1/2 weeks -- and I am noticing no

surges/changes -- is my daughter a " non-responder? " If so -- is there any

anecdotal data on why certain kids are not responding? Thanks!

>

> Hi Sam,

>

> I hope we can figure this out for you because it does appear to be pretty rare

for NV not to show signs within a day to a few days...and so far the longest

time reported for a surge was around 2 weeks. I don't know if anyone's child

took longer than that. There are a few that stopped due to not being able to get

it in, and Bibi just stopped due to behavior but we are speaking offlist and she

may take Liralen's advice and start again very slowly and will keep us posted.

(initial bad behavior just like when first starting fish oil is not uncommon as

a typically mild temporary side effects lasting about a week)

>

> Here are some questions for you:

>

> Hydration- are you making sure Evangelique is well hydrated? Normal amount of

liquid a day would on estimate be body weight divided in half = amount of

liquid. Keep in mind liquid is in food too. More here on that

http://pursuitofresearch.org/faq.html#serve

>

> Elimination/detox stage The first 2 weeks we have found to be the biggest

signs of detox in regards to elimination. The signs of it would be an increase

in soft (not necessarily loose) very foul smelling bowel movements. Some parents

have described they look different as well- but without going into details the

most important aspect to me is that even if the child formerly was constipated

frequently -they are now regular and their poops (to put it bluntly) stink!!!

Have you noticed this yet? I suspect not but let us know.

>

> I believe that this stage is important and we typically see surges during the

detox. There are a number of foods in NV including the essential amino acids

that will naturally and dramatically increase the body's production of the

antioxidant glutathione. " The antioxidant glutathione—critical for the body to

excrete metals—typically works by binding to heavy metals, which the body then

knows to eliminate. In 2004, researcher Jill , Ph.D., of the Arkansas

School of Medicine, led a pioneering study that showed autistic kids had

significantly less glutathione than typical kids—which put their bodies in a

state of " constant oxidative stress. " In other words, autistic kids were

genetically predisposed to have low glutathione levels, making them particularly

susceptible to heavy metal toxicity. " http://pursuitofresearch.org/science.html

>

> Level or heaping scoop? Sometimes it may seem silly but just by raising up the

dosage a tweak has made a difference in a few cases. NV appears to be dosage

dependent. So are you using level or heaping scoops? I recommend heaping if

level isn't working -at least to try before you give up. Also don't forget the

product comes with a money back guarantee if it doesn't work within the 30 days

at all. I'm sure that this would be money you wouldn't want back -you want it to

work as I know I would!!! But just to let you know you can get the refund just

in case. I again no very few that did and hope you don't have to either. Here's

more about dosage http://pursuitofresearch.org/faq.html#dosage

>

> Also while most of us look for speech surges first in this group, please don't

underestimate the other areas of first sign surges which are also welcome and

beautiful including sudden increase in humor and laughing/smiling, suddenly more

facial expression and/or oral exploration, sudden new interests in

music/humming, exploration and imagination, picking up meaning of abstract humor

or thought, sudden improvement in academic, sudden improvement in motor planning

in the body. http://pursuitofresearch.org/pursuit.html

>

> Are you saying you have seen no change in any area? While most of us have seen

the dramatic surges I hope you see too soon, some have only had mild surges and

again appears to be pretty rare for those who have really given NV a good go at

full dosage for at least 2 weeks and have seen no changes at all. While it's

probably impossible for NV to work for all -I wouldn't give up just yet. While

most of us have found the NV alone (with the fish oils as they are the essential

fatty acids and not found in NV) we do have one parent who only saw mild surges

previous that mixed into her child's NV serving both probiotics and digestive

enzymes and 'then' saw dramatic surges. The success rate for NV appears to be

higher and the surges more dramatic than the fish oils pretty much across the

board -but of course there are always going to be exceptions. I do hope your

child isn't an exception. Please do get back to me when you have a chance, and

hope others can share more to help.

>

> Best!

>

>

>

> =====

>

[Guest guest]

It is possible your daughter is a non- responder but that would be rare. I

first want to ask a few questions- and also remind you that there is a full

money back guarantee so you have 30 days to try it.

From checking archive history your daughter is about 9 years old with a

diagnosis of apraxia and low tone. You have secured various traditional as well

as alternative therapies for your daughter and she's done well academically in

school even though there was at least at one point a few years ago that a

teacher felt she made no progress at all in speech in a year and at 7 she was

still extremely difficult for the teacher to understand.

I also know there was a period like many of us that you explored vitamin e and

you found a water soluble vitamin e to be more effective than the fat soluble.

So my questions are

What supplements is your daughter on now if any outside of NV?

How are you serving the 4 scoops a day (split into 2 servings or all at once?)

Is she on any medications?

Is she regular, and if she is have you noticed any change in her stools if you

are able to notice at her age!!!

Are you sure she is hydrated enough? (rough estimate is take weight and divide

in half and that is about the amount of ounces)

Are you using a level or heaping scoop (NV for most is very dosage dependent and

that little bit extra sometimes makes a difference -dosage here

http://pursuitofresearch.org/faq.html#dosage

Most of us do see dramatic surges in as soon as a day to three days, but there

are some who it has taken about 2 weeks for before first noticing a surge. And

there are a few who have only seen mild, not dramatic surges, but as in 's

case when they stopped NV the progress stopped...so as she put it " mild surges

are better than no surges at all "

It appears that expressive is the number one area of concern for your daughter,

so that is where you will be focused on looking for improvements -but first

signs can be in areas of humor, music, multi tasking, imaginative play, abstract

thought...look at this list here

http://pursuitofresearch.org/pursuit.html

If sadly your daughter is a non responder we need to document this as it does

appear to be rare -PLEASE take the survey here

http://pursuitofresearch.org/survey.html as one of the reasons people find NV

hard to believe is because the success rate is so high for so many ages and

conditions.

But I wouldn't give up just yet. I want to help you just in case you do want a

refund but can't find your email anywhere in our data base. Perhaps you ordered

under another email? Did you order through one of the sites here

http://www.facebook.com/topic.php?uid=115029735601 & topic=14809 ?

Let me know and I do hope that there is just something little that can be

tweaked so that you too can see the surges we are seeing!

=====

[Guest guest]

Wow Sam you raised many good points I'd like to address. I'll start with the

meds that Evangelique was on and how I believe yes that is affecting her yet

showing all the surges - but I say thank goodness she's on NV when you see what

I found -and I also want to address her frustration/ABA.

About the drugs -the steroids do affect various aspects of the body -so I'd love

for you to take the following and share with Evanglelique's doctor and discuss

NV with him or her -I believe they will be just like my children's doctors and

highly supportive of you continuing for many reasons. My thought after reading

about the oral steroid/pulmicort nebules treatment is that right now NV may be

helping Evangelique in areas that are probably more important in her functioning

than even the speech- all forms of steroids come with risks of affect to various

areas of the human body including the two I read most about -the bones and the

adrenal gland. This includes not just the oral and inhaled versions that

Evangelique used -but even topical!

To add to that the biaxin -I'd say her little body was already dealing with

probably a few changes to say the least. Good nutrition is important at any

time -but certainly if you read up on what steroids do to the body -probably

most important before, during and after treatment. Even before I searched I

suspected that steroids can affect metabolic function because I had a neighbor

that was quite thin and was a model -her daughter is now a model too- but the

mom got injured and was put on oral steroids. She blew up like a balloon and no

matter how she diets and works out she has never been able to lose the weight.

This was a neighbor I had when I lived in NJ prior to me moving to Florida and

OMG do I have to get in touch with her about NV! Point being -many of us

suspect there are metabolic issues to begin with in our group of children with

apraxia and autism. So add to that a trial of steroids.

Here are just a few of the studies I found- and of course I'm no expert on this

and encourage you to share with your child's doctor. But to me there is no

doubt that this would affect your child's progress at least temporarily. In

fact based on what I read it would even be possible to see regression after the

steroid trial.

Info on the side effects of the drug:

http://www.drugs.com/sfx/pulmicort-respules-side-effects.html

Since suppression of the adrenal function is mentioned in a few studies -here is

what that means from one site:

" among the main functions of the adrenal cortex are the regulation of the

mineral metabolism (sodium, potassium, chloride), water balance, metabolism

(utilization and distribution of carbohydrates, protein, and fat), allergic and

immune reactions (such as hypersensitivity, allergies, and autoimmune diseases),

and production of the male and female hormones (progesterone, testosterone,

estrogens, DHEA, etc.). "

http://www.drkaslow.com/html/adrenal_insufficiency.html

And a few studies:

Effects of inhaled steroids on growth, bone metabolism and adrenal function

Author: , Inhaled corticosteroids are a first-line therapy for

persistent asthma in children. Major safety concerns of long-term inhaled

corticosteroid therapy include suppression of adrenal function, growth and bone

development.

Source: Expert Review of Respiratory Medicine, Volume 1, Number 1, August 2007 ,

pp. 65-74(10)

potential effects on bone mineral density and growth velocity

Systemic Absorption of Topical Steroids

Metabolic Effects as an Index of Mild Hypercortisolism

Jerome M. Garden, MD; Ruth K. Freinkel, MD

http://archderm.ama-assn.org/cgi/content/abstract/122/9/1007

In all patients, there were rapid and sustained suppression of endogenous

cortisol production, twofold to threefold increases in fasting insulin levels

indicating insulin resistance, and elevated levels of polymorphonuclear

leukocytes. Two patients also experienced reduced glucose tolerance. These

findings suggest that application of potent corticosteroids to large areas of

diseased skin results in sufficient systemic absorption to cause not only

adrenal suppression but some degree of hypercortisolism with greater frequency

and rapidity than has been suggested. Prospective monitoring of insulin-glucose

relationships as a sensitive index of the metabolic effects of glucocorticoids

may provide a means of assessing excess systemic absorption that is not

predictable on the basis of adrenal suppression or circulating levels of the

drug.

Volume 28, Issue 1, Pages 39-46 (January 2007)

Metabolism of Synthetic Steroids by the Human Placenta

Pregnant women with asthma are frequently exposed to synthetic glucocorticoids

and glucocorticoids are known to reduce fetal growth

Prevalence of metabolic bone disease among chronic rhinosinusitis patients

treated with oral glucocorticoids

Authors: Rajasekaran, Karthik1; Seth, Rahul; Abelson, Abby; Batra, Pete S.

Source: American Journal of Rhinology & Allergy, Volume 24, Number 3, May/June

2010 ,

Background: The treatment of chronic rhinosinusitis (CRS) often requires chronic

or intermittent oral steroid therapy, which has the potential for adverse

skeletal effects, including osteoporosis and increased risk of fragility

fractures. The purpose of this study was to determine the prevalence of

osteopenia/osteoporosis (OP) or low bone density (LBD) in patients with CRS

with/without polyposis treated with oral glucocorticoids.

Conclusion: Patients with CRS with/without polyposis treated with oral steroids

who underwent bone density testing were found to have a high prevalence of LBD.

High index of suspicion is required to identify at-risk patients and to initiate

careful evaluation and treatment to prevent additional bone-related

complications.

I don't believe the Biaxin has much to do with it -but I would give even that

about a week to work out of the system...but I hope you see what I mean that if

I were you -I would big time make sure my child was getting every nutrient

needed right now for healthy body function due to the steroid treatment. I know

one wouldn't put a child on such a trial unless needed of course -and hopefully

it did what you needed it to do.

Outside of feedback here and from the survey

http://pursuitofresearch.org/survey.html the reason my belief is that NV is

going to work for just about all- and at this point I want to say even for

" normal " kids one will probably see benefits -is because of the feedback from

the professionals in this group who have numerous patients on NV. For example

Barbara CCC SLP in land has around 7 clients on NV and Tara Noia CCC

SLP in Ohio has around 4 or 5 clients on it. In both cases 100 percent are

seeing surges. As Tara said to me " It's just whole food. If I only saw surges

in 30 percent I'd recommend it "

And as I just pointed out about my brilliant but ADHD and even with fish oils

prior to NV absent minded professor older son Dakota who is now 16 and extremely

resistant to NV because he knows we are using it with " special needs " and he

feels he does not " need it " In just a few months he grew an inch and 3/4 and

gained around 17 pounds which he desperately needed -he looks so much healthier

and his grades which were already high -shot up even over 100 percent (yes they

have tests in the HS college he is in that go up to 105 etc.)

And I have no health issues -and I feel better on it. So I at this point feel

that no matter what child goes on it- there will probably be some sort of surge

because goodness knows that most children today are lacking important and

necessary nutrients- and that's all this is.

So Sam let me know what the doctor says.

About the ABA and frustration: Apraxia is a neurologically based motor planning

impairment that can affect any aspect of planned body movement or speech. It's

an " on demand " quirk. In other words a child can breath in and out of their

nose perfectly normal all day long. Here's an experiment for those of you who

haven't tried this one yet which affects most apraxic children long after others

their age can do this= bring a tissue up to their nose and say " blow " and see if

they blow air out of their nose or their mouth (they will blow it out of their

mouth) so then say " no blow it out of your nose " practice with them a few times

" breath in " " breath out " and then put the tissue up again...Tanner typically

sneezed and we would be laughing before we ever got to complete this one- but

that's a perfect example of one sign of apraxia most don't even talk about.

It is most probable in my opinion that if your child is still struggling to say

basic needs that you asking even a simple question like " how was your day? "

would be enough to frustrate her to throw things. Imagine if you had to answer

questions like that with variations of the same words -so " sentences " like " ma

ma baba " I mean perhaps Evangelique is far beyond that in speech -but she still

may not be able to express all she wants to yet. This is where a communication

book comes in -here is information on that

http://www.facebook.com/topic.php?uid=115029735601 & topic=9304

And the motor planning of drawing a perfect circle for the first time -yes that

is huge!!! So that would count now as two things from our list here

http://pursuitofresearch.org/pursuit.html

While I will tell others about the money back guarantee -and think I did tell

you as well -I want to take that back with you. I don't want you to stop it

unless your doctor says something that will completely shock me. I believe your

child needs NV more than anything right now -and the fact you are seeing

positive surges at all -independent play and some improvement in motor planning

is awesome. Let's put some time between the steroids and NV and please keep me

or all of us posted on progress. I have very high hopes for Evangelique that NV

will work and more dramatic than what you have seen, Sam I really do based on

what I keep seeing and hearing!

=====

[Guest guest]

Hi ,

Wow! I think you know more about our history than I do.

To answer your questions, we have been using for three weeks now. The first 3

days, we used 2 scoops in the morning. Then for the next couple of weeks, we

were on 4-5 scoops, equally divided morning and afternoon (I gave 6 for a few

days, because I was hoping for results, and I thought that was the maximum

appropriate dose, but she stopped eating other things, so I scaled back to 4

heaping scoops.) She is well hydrated as I have been pushing liquids when she

is home, but the rest -- don't know -- she is independent. She is on fish oil

and Nutriiveda and that's it. (I am pretty hesitant to add a lot of different

things after the Vitamin E experience.)

I have been primarily looking for articulation improvement, and I haven't seen

anything. My aunt actually gave me the product (I mentioned it, and she bought

it for her and my daughter so I'm not sure where she got it -- my aunt is using

it for the weight loss and loves it), but she agrees there hasn't been any real

difference in speech. I spent yesterday trying to determine if I was seeing

anything else new, and honestly, I just don't think I am.

So -- I guess I can for sure say we are not seeing any dramatic improvement. I

suppose I could be missing something, but I am not seeing anything like others

are reporting.

Thanks for taking your time to answer my questions!!!!!!

>

> It is possible your daughter is a non- responder but that would be rare. I

first want to ask a few questions- and also remind you that there is a full

money back guarantee so you have 30 days to try it.

>

> From checking archive history your daughter is about 9 years old with a

diagnosis of apraxia and low tone. You have secured various traditional as well

as alternative therapies for your daughter and she's done well academically in

school even though there was at least at one point a few years ago that a

teacher felt she made no progress at all in speech in a year and at 7 she was

still extremely difficult for the teacher to understand.

>

> I also know there was a period like many of us that you explored vitamin e and

you found a water soluble vitamin e to be more effective than the fat soluble.

>

> So my questions are

>

> What supplements is your daughter on now if any outside of NV?

> How are you serving the 4 scoops a day (split into 2 servings or all at once?)

> Is she on any medications?

> Is she regular, and if she is have you noticed any change in her stools if you

are able to notice at her age!!!

> Are you sure she is hydrated enough? (rough estimate is take weight and

divide in half and that is about the amount of ounces)

> Are you using a level or heaping scoop (NV for most is very dosage dependent

and that little bit extra sometimes makes a difference -dosage here

http://pursuitofresearch.org/faq.html#dosage

>

> Most of us do see dramatic surges in as soon as a day to three days, but there

are some who it has taken about 2 weeks for before first noticing a surge. And

there are a few who have only seen mild, not dramatic surges, but as in 's

case when they stopped NV the progress stopped...so as she put it " mild surges

are better than no surges at all "

>

> It appears that expressive is the number one area of concern for your

daughter, so that is where you will be focused on looking for improvements -but

first signs can be in areas of humor, music, multi tasking, imaginative play,

abstract thought...look at this list here

> http://pursuitofresearch.org/pursuit.html

>

> If sadly your daughter is a non responder we need to document this as it does

appear to be rare -PLEASE take the survey here

http://pursuitofresearch.org/survey.html as one of the reasons people find NV

hard to believe is because the success rate is so high for so many ages and

conditions.

>

> But I wouldn't give up just yet. I want to help you just in case you do want

a refund but can't find your email anywhere in our data base. Perhaps you

ordered under another email? Did you order through one of the sites here

http://www.facebook.com/topic.php?uid=115029735601 & topic=14809 ?

>

> Let me know and I do hope that there is just something little that can be

tweaked so that you too can see the surges we are seeing!

>

> =====

>